Tuesday, June 15, 2010


What a night. Last night Reagan was completely resistant to sleep. I don't know if she just wasn't tired or what (I didn't see even one yawn) but the chorea/constant movements probably had something to do with it. I put her in bed around 11:30pm and she just laid there moving around. Around 1am I woke to her "talking"...she obviously never went to sleep. I decided to pick her up and try her in our bed. Nothing. She was moving around, babbling, no one was getting any sleep. So I decided to get up and watch some tv with her. So from 1:30am-4:30am we watched the Real Housewives of New Jersey (quality tv, I know). She was wide awake and still very gaggy. She tried to throw up a few times but nothing much came up, it just stayed lodged there in her throat. I kept doing everything I could to get her to swallow it down but she continued to sound gurgly. Finally at 4:30am I put her back into her big girl bed and I crawled in beside her (afraid to leave her side that she might throw up again). She was still wide awake and moving around, hitting me in the face. I'm guessing sometime between 5-6 she finally fell asleep. I got up at 7 and moved back into my bed. Mommies are not allowed to sleep in too much, I have medicines to give, so around 8:45 I forced my exhausted self back out of bed and have been up ever since. Reagan was still fast asleep at noon so I decided to wake her. She woke just as upset and irate as yesterday. She was hysterical. Being nurseless again today, I was regretting my decision to wake her. I gave her another dose of clonidine and about 2hrs later she started to settle down. She was still doing lots of movements but at least she wasn't crying anymore. I spoke to the neurologist today and he thinks we should try to get her in to see the movement disorder specialist. He does agree that these movements seem to be brought on by illness. He also mentioned something called tetrabenazine. He thinks it might be our best bet to help her chorea...although I think we're waiting on the specialist before trying it. Tonight we may just try another dose of the clonidine, although it has never done much to help her sleep (none of the meds have). Tomorrow we're going to pay the pediatrician a visit, just to make sure we're not dealing with an ear ache or something that can be easily treated. Tonight she's still going strong. She's hard to hold with all the movements and constant extension. I really want to get some sleep tonight but I'm not holding my breath. Continued prayers are definitely appreciated.

1 comment:

Anonymous said...

Oh my beautiful non-Sleeping Beauty!! I's amazing how deceiving a picture can be! She looks like she is out like a light.
All my prayers are for marked improvement and total healing.He will intervene!

'The evidence of God's presence far outweighs the proof of His absence.'

I love you.....the Grandma